I am wondering how to be an advocate if you have HFA? I find that people are rather dismissive when they find I am HFA. Even when I went to a support group, the workers were asking me if I was sure I had autism. Made me sad. I want to help, too.
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How to be an Advocate if you are HFA
- Thread starter OkRad
- Start date
Alcyon
Well-Known Member
Why isn't there an "angry face" to click on!? I have had that a few times from professionals: "I would never have known!" or "you don't seem to have Asperger's at all!" as though that's a compliment! Grrrrrr! All that does is make me withdraw even deeper into myself...
toothless
this is mr shadow,my support cat
when you say advocate,do you mean you want to speak for people who have less power to do so themselves,or would you rather be an activist; going to demonstrations about autism,spreading the word of autism and your particular experience,blogging about autism,making videos about autism etc.
the problem is for HFAs to be advocates you are up against much of the parents of us with LFA who say only they can advocate for us and HFAs dont understand what its like,i have to say id much prefer an aspie speaking for me than my mum and dad who dont have a clue what its like to be in my world or what its like to experience severe sensory issues,severe challenging behavior,why i smear [my weapon of choice is blood,not poo]-even aspies could probably guess from their own experiences i do that for sensory and communications sake.
so you would be up against a lot of rubbish from the 'autism community' [not we; who are part of the autistic community],you need to push forward,remind yourself you have a lot to offer and get yourself involved as the care community is crying out for advocates-so many homes are neglecting and hurting severely or profoundly autistic or intellectually disabled people. speak to care organisations and advocacy services for people with disabilities.
i am both an activist and advocate,i used to be used as a advocate for profoundly autistic people as i had a lot of first hand experience of their ways of thought and behavior,i was given some local autism shows to go to,to 'spread the word'-i was non verbal at the time and used my communication program to speak.i later became an advocate for my best friend peter;who has severe intellectual disability with CP as his CP caused a speech impairment so he couldnt be heard very well and he couldnt type or write his feelings but as his friend i knew exactly his feelings on his care and on his past where staff neglected him or shouted at him like a naughty child.
and even later so;became a advocate for some LGBT folks with intellectual disability at my mencap LGBT group,i do a lot of direct work with the facilitator.
both advocacy and activism are rewarding jobs to do,you know your helping other people and if youve got a drive to do that like me you would absolutely love it.
the problem is for HFAs to be advocates you are up against much of the parents of us with LFA who say only they can advocate for us and HFAs dont understand what its like,i have to say id much prefer an aspie speaking for me than my mum and dad who dont have a clue what its like to be in my world or what its like to experience severe sensory issues,severe challenging behavior,why i smear [my weapon of choice is blood,not poo]-even aspies could probably guess from their own experiences i do that for sensory and communications sake.
so you would be up against a lot of rubbish from the 'autism community' [not we; who are part of the autistic community],you need to push forward,remind yourself you have a lot to offer and get yourself involved as the care community is crying out for advocates-so many homes are neglecting and hurting severely or profoundly autistic or intellectually disabled people. speak to care organisations and advocacy services for people with disabilities.
i am both an activist and advocate,i used to be used as a advocate for profoundly autistic people as i had a lot of first hand experience of their ways of thought and behavior,i was given some local autism shows to go to,to 'spread the word'-i was non verbal at the time and used my communication program to speak.i later became an advocate for my best friend peter;who has severe intellectual disability with CP as his CP caused a speech impairment so he couldnt be heard very well and he couldnt type or write his feelings but as his friend i knew exactly his feelings on his care and on his past where staff neglected him or shouted at him like a naughty child.
and even later so;became a advocate for some LGBT folks with intellectual disability at my mencap LGBT group,i do a lot of direct work with the facilitator.
both advocacy and activism are rewarding jobs to do,you know your helping other people and if youve got a drive to do that like me you would absolutely love it.
My dr dismissed me right out and said: no, sorry you do not have autism. I have many patients are autistic and you do not behave as they do and it was bad, because my husband also agreed and yet, he lives with me and also I said I have ASPERGERS and then, recently I found out that France does not accept aspergers as something valid.
I have also had people say: but you look so normal; are you sure and oh, well we all have these issues, but doesn't mean we have aspergers.
Or when one thought I had it officialised was talking about all the difficulties it must cause and then, stupid me, wanting to be honest and said that it is not offical, got: oh, well we are all bit strange you know; doesn't make you any different!!!
I have also had people say: but you look so normal; are you sure and oh, well we all have these issues, but doesn't mean we have aspergers.
Or when one thought I had it officialised was talking about all the difficulties it must cause and then, stupid me, wanting to be honest and said that it is not offical, got: oh, well we are all bit strange you know; doesn't make you any different!!!
That would pass me off.
I think you need to think of a way to describe yourself as autistic in those circumstances. Having a look at any medical files or school reports should help being able to pin point behaviours you have had because as you get older you can and will learn how to make up for the deficits you had when you were younger. A lot about autism is what is in the past.
Are doubting your self diagnosis?
If so why?
You seem very similar to me, and my self diagnosis trumps that of any doctor, as I have first hand experience and a very clear, visual memory for me to reference and compare against the wealth of literature.
I'm not saying don't go official, more that we should believe in ourselves over a doctor.
We are probably smarter and we are experts in our own experience.
Not at all! But we live in a world that is full of nts who thrive on professionals and so, for that reason, in order to be taken serious, I need a formal diagnosis.
Understood. I keep thinking about it for the same reasons.
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